I have tested positive a couple of times for lupus and have pain in nearly all my joints (different to the pain of my osteo).I have had trouble concentrating for a while.I am also anaemic a lot of the time,last count was 3.I work on a computer and I deal with the public and have to retain a lot of info.Most of this info that I advise is the same and has not changed over the last few years.However,I am having trouble remembering it on a daily basis.I can be speaking to someone and in the middle of the conversation I lose the thread.I find myself having to read and reread the info in front of me and it still isn't sinking in.I am feeling stressed at the moment,my arthritis is playing up and I am in a lot of pain.I am even taking my work home to read up on,but I still can't seem to retain the info that a customer is giving me and am constantly checking with notes etc.This isn't the me of old.I used to be able to retain all I needed with no problem.I would put it down to old age but I am only 35!My work is suffering,I feel like crying a lot of the time,because I just can't seem to make my brain do what I need it to do!It is so frustrating,my brain just feels like there is a permanent haze there and never mind how hard I try in a conversation,work etc I just can't get through it.Does anyone else feel like this?Is it part of the lupus and if it is what have people done to help it?It isn't any meds because I stopped taking them about 5 years ago.They didn't help and I couldn't see the point of being drugged up all the time.Should I mention this 'brain' thing at my next appt with my rheumie?I don't want to seem like I am looking for problems but this is really getting me down.I feel so stupid at the moment.To the point of resigning my job,which I really don't want to do.Sorry this has been such a long post.
Thanks in advance for any advice,
Hi, Eden. My understanding, from my rheumie & from reading, that just the anemia *alone* is sufficient to cause brain fog, fatigue, etc. (And that's not including how joint pain, headaches, & various other lupus-type problems can add to the awful mix.)
I've improved a lot on Plaquenil (5+ years now) and sun avoidance and OTC pain relievers, but still have my moments. It took some months for my anemia to clear. It was the B-12 kind, probably due to the chronic inflammation so often seen in lupus.
At the pt. I took myself to a new & better rheumie, I was getting neuro-like tingling, like little critters dancing up & down my arms & legs; and I was literally sitting down abruptly to keep from falling down. I was quite a mess, feeling stupid & weak, similar to how you describe feeling.
So.... Which meds, if any, are you on now? Not to be confrontational, but do your dr. and you think what you are experiencing can be dealt with WITHOUT meds? Or are you & he in a prolonged "wait & see" mode?
I know how reluctant my suburban drs. were to give me anything until they were "sure". But, honestly, Eden, they SHOULD HAVE BEEN SURE many years earlier. It took my switching to a teaching hospital rheumie, who in the first 3 minutes of my first visit had me sized up. He re-did all my tests & also sent me to a grade-A dermatopathologist to have my old skin biopsies re-evaluated & a new one done. So I had everything back in less than a month, with ACTION taken. Compare that to the 8+ YEARS my suburban drs. took to come up with... precisely NOTHING. What a waste of years, huh?
We are all different, but so are doctors! I hope something crops up soon that you can all sink your collective teeth sunk into, terrier-like, and not let go one bit until you feel better. Sincerely, Vee (obviously a terrier lover )
My rheumie has been prescribing me diclofenac for my oa but I haven't been taking it.Had a very bad experience before with meds and haven't quite got past that fear yet.I spoke to my gp about not taking it and he was fine.At this very moment and for the last few days I have a really painful ache where my leg curves to join the top of my foot(bottom of shin onto top of foot)I have racked my brain but can't think of a more technical term to describe it!!It is a constant ache,a dull gnawing feeling.Does this sound like oa or lupus?My hip has ached so badly it feels like it's trying to seperate itsellf from it's joint.I don't really want to go and ask my rheumie all this,I feel as though I am looking for problems!I have always just gone with the flow of what my rheumie has said,I find it very difficult to sit there and describe how the pain feels!Feeling tired all the time again and have more blood test tomorrow.Enough about me.How are you feeling?Do you have any support for yourself?Are you managing ok after recent events?Hope you are well in yourself.Take care,bye for now,Eden x
Hi, Eden. I think you should just write down key words from your initial post, and then repeat same to your rheumie! Please give him something to work with & enable him to try to help you, OK?
Thanks so much for inquiring on how I'm doing, Eden. My sister & I both hated the awful damage the Parkinson's did to our father. We're glad that his suffering is over, but we do miss him horribly.
Eden, I kept thinking my "blah's" would go away, and they would---but kept coming back, lasting longer, and affecting more people in addition to myself. YOU are the only one who can break this pattern, by seeking help until it actually helps. So I hope you post back with updates, so we can all keep encouraging you onward---and maybe even pestering a bit, too, as required. With my best wishes to you, Vee
I have had that pain before in my feet/leg too. I only have Lupus. I'm right smack in the middle of a big flare all of a sudden too. My fingers feel like sausages...hard to bed them. My hands and wrists really hurt too. Called my rheumy the other day to find out they can't fit me in until June! SOO I guess I'll just have to suffer. I haven't had this much pain in years. I know it's because of all the stress from my recent divorce and trying to pay all the bills and my parents moving in and all. I think I'll take one of my mother's pain meds and see if it helps.
Had bloods done this morning and then went to work.I am absolutely shattered.I am glad you and your sister are doing ok.My nan had alzheimer's and to watch her suffer was awful,so i know a little of what you are feeling.The old cliche that time is a great healer is true,it's just that sometimes it would be nice for the bad times to go that much quicker.The only good thing is that your dad isn't suffering.
I have a gp appt tomorrow.Should be fun! How is your lupus at the moment?Hope you are taking care,speak soon,Eden x
How are you feeling today?Hope you are better than in your last post.I have a same/similar problem with my hands and fingers etc.They swell and go bright red 5/6 times a day.The veins bulge and the skin feels too tight.My fingers feel restricted,they hurt as well.First thing in the morning,when you first awaken,do you have trouble gripping objects,ie,duvet etc?I do ,I can't grip things or make a fist and my hand has a soft,tingling numb feel.Sorry,I know my descriptions are mind boggling,so just think how my drs feel! .My wrists and forearms ache a lot too.I also know what you mean about the appts.Never available when you most need them. I have the same problem at the minute,my gp can't treat me because my rheumie ordered the tests and my rheumy appt (at the time of the tests)was three months away!Shame the pain can't be more considerate and only visit us by appt!lol! I still have the pain in the curve of my upper foot.Not good today.Sorry too hear about your situation causing you such stress.Hopefully you'll feel better soon,when the situation is less painful.Take care,speak soon,Eden x
Eden, I too have been experiencing some alarm over the slow way my brain works at times since this lupus stuff happened in my life. I guess it depends on what kind of work you do and the way you use your mind on a daily basis in your life as to whether this becomes really an issue to a person or not. I am only 37 myself, and find this happening more than I think it should be happening to someone my age. I don't forget to do stuff so much as I have trouble recalling things that I know are in my brain. Sometimes my brain just seems stuck and won't budge, and then it will just decide to work and the situation clears up. It could be a lot worse, and I know that, and I am grateful. But it just makes one worry if you can continue to perform your job well or will embarrass yourself in a setting when you can't recall something everyone knows you should know and you know you should know, but it just won't come out.
I think it makes sense that it has something to do with circulatory problems and the brain not getting fed--oxygen and other things-- at the levels it should be if lupus is affecting the blood vessels. I know that have shown signs of vasculitis and having circulatory issues, so why wouldn't this have some affect on my brain, as well? It would have the same affect as being anemic, except the lack of oxygen is not caused by a low number of red blood cells to carry the oxygen, but instead just from the blood not being able to get in and around the brain as it should to deliver the oxygen and other stuff the brain needs to function normally and at top speed.
I just hope for the best and forge ahead in my life and career and try to use more tools to help me remember and recall things. I have to make more lists, take more notes and refer to them more often, use things like a planner or calendar to keep up with everything, when only a short time ago, I didn't need any of that stuff. It just makes you get more creative with ways to stay on top of what you have to do in life.
I'm feeling better today, thanks for asking! I got my pills refilled and took 3 of my prednisone. My hands are still swollen but they don't hurt much anymore, although they did when I first woke up this morning. I DO know what you mean about not being able to open things and stuff like that. I used to have that every day and all day but it was worse in the morning. I usually don't get it anymore...havent in years actually until the other day. That's why I knew I was having a bad flare. I hadn't been in that much pain in years. Hopefully this one is almost over for me. Again thanks for asking!
Glad to hear you are feeling better today.I had my gp appt today and two of the problems that I went to see about decided not to come out and play!lol!Typical!Although after my gp pressed the top of my foot,around the ankle area and moved my foot around for flexibility,the pain came back!My hip is a lot better at the moment.My problem area is because I have had this pain for so long,I don't know how to tell the difference between the pain with the lupus and the pain from the oa.Apart from the anaemia and the brain haze that is.Hopefully for you,when your situation becomes less intense and stressful,your bad flare will fade away and disappear for a long while.Letting you able to have some fun and chill,doing something just for you.My dream is that one day I will go on a skiing holiday. .Not practical I know,but we all have to have a goal!lol!
Take care,speak soon,Eden x.
I understand completely when you talk about the brain fog,it happened again in my previous post,right in the middle of typing my sentence!I had to read and reread it just so I could remember the gist of what I wanted to type! .Spoke to my gp today (went in with a list of complaints!)and she told me to stop stressing about the lupus and offered to recommend me to see another rheumie with a very open attitude to all medicine!How cool is she! .She knows me well and talks a straight line so to speak.So it's nice when somebody listens to what you have to say,offers help and tells me to shut up and stop stressing(in a nice way though!).lol!I find it a problem in work though,this brain fog,but I am more determined than last week.I am getting some of my old backbone back(so to speak!).Hope you are well,take care,
Tho Lupus is a recent dx for me, I have over the past year found something that really helps me feel relaxed and alert. In the April 06 Real Simple magazine there was an article "9 Ways to increase your energy." Altho I use the deep breathing exercise to relax, it really helps my whole body feel better. Dr.Andrew Weil suggested doing this exercise twice a day or whenever you feel yourself losing steam: Put the tip of your tongue against the ridge behind your upper teeth. Exhale completely through your mouth, making a whoosh sound. Then inhale deeply through your nose for a count of four, hold your breath for a count of seven, & exhale through your mouth for a count of eight. Repeat for a total of 4 breaths.
It really works! Hope you will try it.
Here's to better days...
I am going to try the exercise you recommended.If people aren't willing to try different things,how can they say it doesn't work?Well that's my theory and I am sticking to it!lol! .My gp has also recommended a book and cd by Paul McKenna,Confidence.As well as the book and cd she also advised me to take gingkyo biloba with a high dose of omega 3 &b.If others have tried these,I would be happy to hear if they have/haven't helped.Thanks for your advice and definately here's to better days......... .Take care and speak to you soon,